In the furnished basement of a home in Highland, Utah, Brick Williams held his guitar, slowly finger-picking chords along with his student.
“You can use a pick, it'll give it more pop,” he explained, moving his hands along the fretboard. His student mimics him, playing along to the tune of “Christmas for Cowboys" by John Denver.
Williams has taught guitar lessons all over Utah County for the last 24 years, traveling between 50 to 60 students a week. He’s his own boss. Not working for an employer means he shops for his health insurance on the Affordable Care Act marketplace.
Many Americans, outside of people with coverage through their job, purchase health care insurance to cover the what-ifs, like an unexpected illness or a broken arm. There are no what-ifs for Williams.
“I was born with a disease called common variable immunodeficiency,” he said, adding that it took doctors 19 years to figure out what was wrong with him.
His youth was filled with hospital visits to find an answer to his respiratory issues.
“They were starting to see scar tissue in my lungs,” he said. “I still remember the doctor said, ‘You have the lungs of an 88-year-old man, and you're 19 years old, and you're going to die if this doesn't get addressed.’”
After “a lot of tests,” doctors were eventually able to diagnose what was wrong with him: a genetic disorder that severely weakens his immune system.
“It's just bad luck, that's really all it is,” he said.
To live, Williams requires two infusions every few weeks that cost around $12,500 a month. Right out of the gate, he easily reaches his yearly out-of-pocket maximum.
“The infusions are made from plasma,” he explained. “So if you donate plasma, that's what they're using to save people like me and keep us alive.”
The pandemic-era tax credits for the Affordable Care Act marketplace are set to expire on Dec. 31. If Congress decides not to extend them, Williams said his premiums will more than double.
“It's going to go up to about $1,450 a month, and we've been paying $600,” he said. “$1,450 is a bare minimum, because it's only if my wife and both of my daughters, who still live at home, don't have any health problems.”
By law, insurance companies within the marketplace can't deny coverage to expensive clients like Williams with pre-existing medical conditions. It was one of the law’s centerpieces when President Barack Obama signed it in 2010. This is not the case for companies that operate outside the government program.
“For the people who are significantly ill, the insurer can decline to issue coverage. There's nothing in Utah law that would prevent that,” said Tanji Northrup, deputy commissioner of the Utah Insurance Department.
And she said it wouldn’t be as simple as writing a bill to stop insurance companies from declining coverage.
“What we hear a lot is that the insurers will just choose to leave the market,” she said.
Insurance companies use what’s known as risk pool financing. According to the World Health Organization, premiums from a large, diverse group cover everyone’s medical costs. It relies on most people only needing routine care throughout the year, accounting for the occasional large medical emergency. This spreads risk and makes payments predictable.
“When an insurer doesn't have a large enough pool to spread risk, they can't afford to offer the product, and they just leave the market,” Northrup explained. “It's a very difficult balance for everyone — individuals and the insurers who are providing the coverage.”
For now, Northrup said the only options for the 400,000 Utahns who use the marketplace are bleak.
“I know someone who has a significant health concern; it happened with my stepbrother, and I'm like, ‘You're going to have to work for an employer for the rest of your life,’” she recounted.
Williams is considering similar options.
“We've been trying to figure out how to raise the income or what to do as far as changing jobs, changing careers. I don't know, but that's what we're right in the middle of, trying to figure out,” he said.
No one seems to have a clear answer to the predicament facing millions of Americans, not even Congress, which faces the end-of-the-year deadline. Votes on competing partisan plans, as expected, failed in the Senate.
Rep. Mike Kennedy represents Utah’s 3rd Congressional District and is a family doctor.
“It's an issue that is very frustrating for me, because I'm a freshman in Congress,” he said. “Democrats back in 2021 set this deadline up, and nobody talked about it until after the shutdown.”
When asked if a shorter-term extension of tax credits could give lawmakers time to write a more effective bill, he told KUER the idea “isn't off the table.”
“I've seen some proposals exactly talking about that,” he said.
“It's a matter of, do you have the votes to do the thing? And in some people's case, like the individual we're talking about,” he said, referring to Brick Williams, “those kinds of opportunities could be transformational.”
Kennedy is skeptical Congress will be able to get the job done before Dec. 31.
“In the next two weeks, I'm not confident that we could do what needs to be done for everybody, but I know we can do some things,” he explained.
One idea that stood out to him was a part of the Republican plan that failed to get enough votes in the Senate: adding federal support to an individual’s Health Savings Account. The proposal, though authored by Bill Cassidy, R-La., and Mike Crapo, R-Idaho, didn’t allow the money to be used for coverage premiums.
“I think if we're looking at the opportunity to infuse HSAs with federal support and then allow the patients to shop around to find programs outside of the Obamacare exchange that might work for them, I think that could be a great innovation,” he said.
For Brick Williams and the over 45 million other Americans under the Affordable Care Act umbrella, their premiums are going to go up, and tough life decisions will have to be made unless the government votes to extend.
Open enrollment for health care through the marketplace closes Dec. 15 for plans that start Jan. 1.
